Tales, Tools, Trials and Triumphs of Being Blind in NYC

Every Blog Needs an Introduction

So, you’ve stumbled upon my blog, or I’ve shared it with you. Either way. Every good blog needs an introductory post as to why it has been started, and here’s mine:

I have been dealing with progressive vision loss for 13 years…well, I’ve been dealing with it all my life, but I have only known about it since the age of 15, when I was diagnosed with Retinitis Pigmentosa. Since then, my life has been a series of re-evaluating and learning to live with a “new normal.” The only problem is, every time I get used to a new normal, it changes, and I am forced to adapt once again. For all these countless new normals, I have started a handful of blogs that never got past the first two or three posts. But, here I am again, putting fingertip to keyboard in an attempt to share…well something anyway.

Honestly, this is sort of a New Year’s Resolution; albeit a month late. For the past month, I have been going back and forth in my mind as to whether I really wanted to take a stab at the writing thing again. However, after various exchanges with people – some strangers and some friends- I realize the general goings-ons of a person in my shoes is interesting to others. With that in mind, and armed with a few motivational quotes for courage, I’ve decided to go for it.

In closing of my introductory post, I hope you, whoever you may be, will find encouragement, humor, insight, or at least entertainment from the stories of my life.

I have been impressed with the urgency of doing. Knowing is not enough; we must apply. Being willing is not enough; we must do. –Leonardo da Vinci

18 thoughts on “Every Blog Needs an Introduction”

Rebekah, I work at the Eye Institute in Morgantown. I have been privileged to have opportunity to work with a wonderful retina specialist, Dr Leys. I have learned so much about several conditions of the retina including RP. I help with testing on patients who are newly diagnosed and ones who have been dealing with RP their whole lives.
I did not know you had been diagnosed. How long ago was it when you were diagnosed?
I’m sure there are wonderful specialist in NY. I will be thinking of you and praying. If you should ever need anything that I could help with please let me know.
Bunny 🙂

Hi, Bekka, I learned about your blog through my daughter Kim, you are “friends” on facebook. Your mom Pat is my first cousin. My name is Marion, your grandma Lorraine and my Dad were brother and sister. She is know as Aunt Sissy in my family,I e-mail w/ her almost every week or so, and have been for the past 3 yrs. I also have many hurdles ,have been sick for 40 yrs,(since I got married) and here I am ,,still kicking., Needing back surgery in the next few weeks, but I will be following your blog. Your husband is an extremely talented artist. I wish for you two only the best. love, your second cousin Marion

Hi Marion! It is great to meet a member of the family! Thank you for your kind words and for following my blog. I hope your surgery goes well, and will keep you in my prayers 🙂
I’ll tell Adam what you said about his art 🙂 that is so nice of you to comment!
Keep in touch!

Had a hard time finding this blog again, then I went on Bing and found it. It takes a lot of guts to do what you do, I have lived here my whole life and the only time I go into the city is to the doctors. Good luck,with the dog application,I will be following your journey, Funny to see Aunt Sissy and Pat’s comments. Thanks for sharing,it gives me hope for my situation.Love cousin(2nd) Marion

Hi there! Great to meet you!!
It’s an interesting life we lead, eh?
As for your question, I basically have a lack of day/night vision now (insert expletive, but not really). One way I found to cope is to step lighter. That way, when I do hit something, which is often, it doesn’t hurt so much. And for the times it hurts like mad, I think I’m just getting used to the pain…lol.
I totally feel your pain tho. Lately I’ve been running the right side of my forehead into everything, from subway poles, to cabinet doors, to real doors…ouch. Guess it’s good I’m hard headed.
I suppose using a cane could help, but let’s face it…none of us are going to use the stick until it’s a last resort, and never in the house, so i guess pain is just part of the territory.
So glad you found my blog and said hello! It is nice to have a fellow RPer to share stories with!

Thinking about the future and having to use a walking stick makes me want to stay indoors! I am still able to drive and normal-ish stuff. But its VERY difficult. I can’t listen to music sometimes in the car because I have to focus. Extreme focus! I need to know about that cars around me at all times. I know every bump in the roads I use! I get so much anxiety if I have to drive somewhere new. I’m in the earlier stages of RP, so I’ve been told. My night vision is non-existent and my peripherals are joke-able. I was super depressed for a little while, but it seems like an interesting journey now. One thing I remember though, I was diagnosed at a Navy medical facility. They told me I couldn’t see at night, I was thinking, “how would they know?” Like, 5 hours after them poking in my eyes, they very coldly told me I was going to be blind, that I had RP. It pissed me off so much! They didn’t even care that they had just been in my face for 5 hours. They invited more Corpsman (doctors) to look into my eyes to see how cool the pigmentation looked. I’m used to this now. All optometrist or ophthalmologists almost beg to dilate my eyes. Did you get this too? Also, no one in my family has RP, I found this weird as the Navy corpsman were very insistent that someone in my family had to have this. Does anyone in your family have RP as well? I’ve gone to the Retina Foundation for research. It sucked, they just looked at my eyes the whole day. It’s made me wary of even going to research facilities that invite you or telling your Optometrist. Did you feel like this? Why even bother? Nothing will come of it except more in my face breathing for hours! So many questions! 🙂

Thinking about using a walking stick still makes me want to stay indoors too (although i already use one) lol. Unfortunately, i never got to experience driving as i was diagnosed at 15…right before I would get to drive. Blast!
When I was first diagnosed, i apparently didn’t have night vision or peripheral, but that was news to me.
I was diagnosed at a university research hospital. It was def an all day event of torturous tests (did they stick the prong contacts in your eyes too?). They were kind when they told me, but couldn’t give me really definite info. They said maybe i’d keep my sight for a while, maybe it’d go a lot in one year and then not for a while, maybe it would be consistent. They said at the time that few people go completely blind…i wonder if they said this to comfort my parents and i.
I definitely had people wanting to poke at my eyes whenever i had an appt.. My least favorite test is the visual field test…where you are in a big white dome buzzing lights you see for a good half hour. AGH!
I have an aversion to doctors in general, and definitely don’t follow the recommended eye visits…basically for the same reason you avoid them. Cost, time, and torture for you to tell me that i’m more blind than last time I came (no duh) and there still isn’t a cure.
Also, no one in my family has RP either. Seems like we’re two peas in a pod. Wonder why we got this?
There’s genetic testing to see what genes caused the RP, so I’ve heard, but I haven’t gotten it done. Aversion to doctors and needles + a good amount of money. Have you gotten the genetic testing done?
I’m sorry the doctors were so calloused to you. were you in the navy when this happened? That would really suck.
It’s really awesome to have a fellow RPer to discuss all these things with!!! Keep on asking, I am an open book! (though, admittedly, I sometimes take a few days to answer)
Ok, now that i’ve practically written a novel here…I look forward to ur next comment 🙂

I’ve been told about the gene testing. I am especially worried since I really do not want to pass this on to any children if I plan to have them. It’s super expensive. I think I will only get this done if for sure children is in my future.

I’ve actually tried to do some research on this. My mom has Lupus and in the depths of the internet I found a research paper that links Lupus to RP. Nothing definite so, maybe just a coincidence.

I’ve also found other sources that say people who contract mononucleosis at some point in their life (which I did at 15) can develop a form of RP. Which seems less likely since I can remember having to ask my sister to walk me to the bathroom at night as a kid. I clearly already had night blindness

Post symptoms of mononucleosis are often confused with syphilis as well. The doctors always ask if I had syphilis and I’m always like, “EWW!! NEVERRR!!”

Yes, I joined the Navy and part of the boot camp process is to go through medical. They do dental, vision, immunizations, everything. I was diagnosed there at Navy boot camp. It sucked. I wasn’t allowed to call anybody until I was “separated” from my division. Which was about 3 weeks later.

Driving isn’t all that great. I actually kind of hate it. But I love my car!

Okay more questions! Do you have “flashes” of light? I can’t seem to find this as a symptom of RP but I get these flashes that streak across my field of vision.

How fast did your vision loss progress? I feel like mine is going too fast

I’ve wanted to have the testing done, but cost + needles = procrastination.
Interesting that your mom has Lupus. A lot of auto immune problems run through my family. I, myself have s way too many allergies. My mom has done some digging and has found links between auto immunity and RP like conditions, namely Auto Immune Retinopathy (AIR). Hmmmmm… wonder if this goes deeper?
Speaking of RP, I myself see about a million flashing dots at all tims, and like you, have found no mention of it on RP sites. I have also talked to others with RP who don’t seem bothered by the lights…
As far as my vision loss goes, I feel like it has gone way too fast over the past 8 years. And it seems like it will settle for a bit, but as soon as i get used to it, i lose a bumch all at once.
I also have “bad” and “good” vision days (which are just variations of bad). Do you have these?
I had mono at 19…but then I had already been diagnosed by then.

What a sucky way to find out about having RP, and not even being able to tell your family for 3 weeks? You’d think if the military was going to kick you out because of a failed medical test, they would allow you to speak with your family. lame. Or am I assuming too much, and you were allowed to stay in?
So, do you have any allergies?
I still haven’t even thought of kids…I’d be too afraid to take care of one. It seems like such a visual job. But then, tons of other blind people have done it, so maybe I’m copping out. I wouldn’t let the test stop you from having kids though. You and I seem like pretty cool and capable people and I’m sure your kids would be too, no matter what risk factors there may be.
PS sorry for the random typos…